Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Tuesday, October 16, 2007

October 16, 2007 - Pushing Paper...Or Not

Lately, I haven’t been sweating the details.

It’s not that I don’t know how. Administration has always been one of my gifts. I’ve even worked full-time in higher education administration (Director of Admissions and Assistant Dean, University of Dubuque Theological Seminary, 1985-1990).

I do know how to keep track of details. Since coming down with cancer, I just don’t want to.

My desk at the church is piled high with papers. “I’ll bet you know where everything is,” a kind visitor will remark, beholding the sight. The scary truth is, I don’t know where everything is. (And this, from a person who used to lecture seminary students on efficient ways to organize a desktop.)

Having gone through chemotherapy and come out the other side, the thought of spending an afternoon doing something so mundane as filing has no appeal whatsoever. So, I just don’t do it.

Last April, facing a huge backlog of financial record-keeping that began when those love letters from doctors and insurance companies started packing our mailbox, there was no way I could have gotten our tax information to the accountant on time. So, I asked him to file for an extension. Yesterday was the do-or-die deadline, and I was on the phone to the accountant as late as 3 in the afternoon, answering his last-minute questions so he could file our return electronically. I could have submitted our information to him much earlier, but my recently-acquired aversion to details got in the way.

It seems like there are so many other, more important, things to do. Like preaching. And writing. And other things that – in my naive hope, anyway – may leave some sort of legacy. Compared to those pursuits, clearing off the desktop just doesn’t rate. These days, I only feel like doing things that feed my soul.

I’m quite sure there are nasty things hiding out under that pile of paper that will come back and bite me eventually. The thought of that is enough to concern me, but not enough to compel me to action.

So, what’s going on, here? I’m still trying to figure it out.

It’s possible that I’m mildly depressed. Depression is a common- enough side-effect of cancer, and I’ve heard how – ironically – the black clouds often descend only after treatment is concluded. When I’ve had a task before me – getting through chemo, consulting with specialists about a stem-cell transplant – depression hasn’t been on my radar screen (it may have been there all along, I just didn’t know it). Now, as I’m navigating the featureless fogbank of “watch and wait,” I’m becoming aware of how lonely it is out here. I’ve been thinking I need to find somebody (a dual-qualification professional, one who knows cancer as well as psychology) to talk with about how I’m coping – and maybe I will.

It’s often said that depression is anger turned inward. Surely, cancer’s given me plenty of things to feel angry about. The problem is, it’s hard to direct that anger anywhere constructive. There’s nobody to blame for giving me cancer (unless I blame God, and that leaves me in a theological conundrum). My doctors have been doing a great job treating me. My family’s been wonderfully supportive. Other than the people who send me all those window envelopes, I really can’t blame anyone – so, maybe I’m subconsciously punishing myself, through self-destructive behaviors like letting the papers pile up on the desktop, or procrastinating on paying bills.

All this is leaving me with a lot of questions, and not a whole lot of answers. I feel different, this side of cancer treatment. I am different. Just how, I’m only starting to figure out.

10 comments:

Maybe the top of your desk is indicative of your mind? don't clean the top of my desk,you'll disturb my filing system.

Like you have gone through lymphona, and then six cycles of CHOP/R. I lost a kidney, a spleen and eleven lymph nodes before chemo started. And now am looking at more chemo in my case Rituximab once every three months for at least four years. The Rituximabin my case is preventative medicine. Seems those who have had the CHOP/R treatment usually develop leukemia within a year or so and then succumb to same shortly thereafter. In my case this is anexperiment; it doesn't help that I also have Lupus. It was during thefinding of the Lupus that there wasa problem with my kidney, would not have known about the cancer otherwise. No outward symptoms other than excessive perspiration and severe cankers in the mouth.

Your posts are most enlightening,especially those have to do with your insurance problems. Here inthe province of Ontario such problems are non-existent. Government sponsored through fair taxation operates the system. People are treated based upon a triage system; mind things can and do go wrong and there is a chronic shortage of beds and specialists in some areas. Medicine here is notbased on making money; more based on ensuring the patient survives.

As to your desk, may I suggest anelectrostatic copier plugged in and turned on. Get yourself a largethree ring binder two inch size should be sufficient.

IN additive order from first symptoms of problems to the presentfiled by date put all the relevantpaper in the binder. Make a duplicate set of same for one drawer in your filing cabinet. If the binder gets too full, get another binder. Ditto for the filing drawer. I segregate my sheets by year and month, the most recent being on the first page when you open the binder.

The binder is the record book,the files in the filing cabinet arealso punched three hole and it's those files/papers which are relevant to your visits to the various specialist, take what you need when you visit the variouswhite-coated people.

Now one final note...you should have a third file, sort of a followup file for afterwards, after you've seen the doctors and after each stage is completed. Do thenotes in your own hand-writing;it will give you practise and helpyou elicitate your feelings. This isn't the weekly sermon Carl, this is you writing to you.

I was born end of May 1946 so I suspect we're similar in some ways. I am single, no children and livewith my widowed mother. Retiredas an audio visual technologist(in 1994 under protest) and a transportation journalist writingunder a non de plume since then. I took retirement a year ago but still dabble now and then. My diagnosis of cancer was two daysprior to the Labour Day weekend in2006. So far so good.

Bryce, I haven't heard anything before about leukemia "usually" following close on the heels of R-CHOP treatments. The books that I've read have talked about secondary cancers as being a possible outcome of chemotherapy (and radiation, too, which I have not had so far), but they've all made it clear that the risk is pretty small. If you have any further information indicating a higher risk, I'd be interested to see it.

I'm interested to see, too, that you were treated surgically (which is what I take it you mean when you speak of "losing" a kidney, your spleen and some lymph nodes). My understanding is that lymphoma is almost never treated surgically, so I'm wondering if perhaps you had another cancer as well.

Thanks for the advice about filing methods. Actually, I do have a notebook where I keep papers related to my medical treatment, so that's not such a concern to me. My paper overload is mainly on my desk at the church, where I'm way behind on dealing with various papers related to my professional life.

At this stage, much of that stuff is so old that disposing of it may be relatively simple (using the proverbial "circular file"). I've just got to get the will to deal with it.

Bryce, I haven't heard anything before about leukemia "usually" following close on the heels of R-CHOP treatments. The books that I've read have talked about secondary cancers as being a possible outcome of chemotherapy (and radiation, too, which I have not had so far), but they've all made it clear that the risk is pretty small. If you have any further information indicating a higher risk, I'd be interested to see it.

I'm interested to see, too, that you were treated surgically (which is what I take it you mean when you speak of "losing" a kidney, your spleen and some lymph nodes). My understanding is that lymphoma is almost never treated surgically, so I'm wondering if perhaps you had another cancer as well.

Thanks for the advice about filing methods. Actually, I do have a notebook where I keep papers related to my medical treatment, so that's not such a concern to me. My paper overload is mainly on my desk at the church, where I'm way behind on dealing with various papers related to my professional life.

At this stage, much of that stuff is so old that disposing of it may be relatively simple (using the proverbial "circular file"). I've just got to get the will to deal with it.

Believe it or not our desks sound familiar - my "system" was so in place; one side for medical and the other side, well it was pretty clean. My well-meaning sister decided to lend a helping hand and now I don't know where anything is. So now my excuse is colored with discouragement...I don't want to look at the medical and I don't want to clean the deskstop. Depression? Avoidance?

Carl:For some reason your reply to me appeared twice in the blog.Working in reverse, an operating paper shredder will do wonders tidying your desk. Maybe get one from the local big-box office supply store. So often items of such a nature are best shredded, now.

So that's how it started, with my first CHOP/R treatment a week later.

What also was found on the right kidney, 2 cysts measuring 7,8 and 3.6 cm respectively. No visible obstruction.

So that tells the tale, Carl.

Now as the Rituxamab treatments. This is an ongoingexperiment here in Ontario (and British Columbia as well as Newfoundland) funded by our federal government. It is not a provincial experiment. tets have sownas previously noted if one has had lymphona AND also has Lupusand sometimes also has indications of an additional symptom of Lupus,in my case Sjogren's syndrome thenit is likely the patient willcontract some form of leukemia within 12 to 18 months after completing the CHOP/R treatment.

I'll let you discover on your own what Sjogren;s is, and its effects.I will tell you of the saliviaglands on a scale of 1-4 with 4 being more positive, I ranked in the upper range of 3.50 to 4 with over 3/4 of the glands harvested.

This far however have not exhibitedsevere muscular or joint pain.

I stand three inches short of sevenfeet tall, combine that with my weight of 167.5 kilogrms (where2.2 pounds is equivalent to onekilogram. Yes I am huge, not so much fat just big.

As to the future we'll see,I see the specialists on the morrow(Friday) and receive my first Rituxamab.

Carl, I think the feelings you're going through are normal. At least they fit my definition of "normal" since I'm going through much the same as well. I was diagnosed in May of this year, and since then, I've done my best impression of a slug--I've even had a hard time forcing myself to do some of the things I love, such as working on my next book (I'm behind deadline now). Call it stress, call it shock, call it depression, call it whatever you want. When you've been through the eye of a hurricane, it's hard to remain perfectly logical about life.

Thanks for the detailed information, Bryce. When I read your words, "Seems those who have had the CHOP/R treatment usually develop leukemia within a year or so," I took you to mean that all people who have CHOP/R are at high risk for leukemia. I now understand that you were speaking of those with your particular constellation of ailments.

The same probably goes for your surgical treatments. There may have been other reasons (beyond the lymphoma itself) that callled for surgery as a medical response. I was dealing with B-cell Non-Hodgkin lymphoma, "diffuse mixed large and small cell" initially, but now my grading has been changed to indolent (small-cell).

One of the frustrations of communication among NHL patients is that, very often, our conditions are so different - drawing from among the 30 or 40 sub-types of the disease.

Thanks, too, for the suggestion of the paper shredder. We've got one in the church office, of course. I've also got a trash can that sits right next to my desk. As I said in the initial post, it's not for lack of knowing what to do that I'm having problems with paper. It's the lack of will to do anything about it.

Thanks, T.L., for affirming that your experience is somewhat similar to mine. There's a sort of long-term, low-level effect that sure does sneak up on us.

I know what you mean about delayed book projects as well. My books are in a rather different line than yours (resources for fellow preachers), but the publication of my most recent one has been delayed, just because I haven't been able to get around to finishing it.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.